I just, I can’t, and you can’t make me. (This is me squinching my eyes tight.)

I find it profoundly disturbing.

So, on some level, I can empathize with those who are profoundly disturbed that Planned Parenthood donates fetal tissue for research. It sounds terrible.

Of course, much of the uproar deals with the alleged sale of said tissues and organs—an act which, if true, would be terribly illegal—but there is little evidence to indicate that Planned Parenthood has or does sell tissue.

They do charge for storage and maintenance, which fees are quite legal. The whole business is quite legal.

(1) IN GENERAL – The Secretary may conduct or support research on the transplantation of human fetal tissue for therapeutic purposes.

(2) SOURCE OF TISSUE – Human fetal tissue may be used in research carried out under paragraph (1) regardless of whether the tissue is obtained pursuant to a spontaneous or induced abortion or pursuant to a stillbirth.

There are important sections on the conditions of a licit donation, auditing of procedures, research and state law, and then:

PROHIBITIONS REGARDING HUMAN FETAL TISSUE SEC. 498B.

(a) PURCHASE OF TISSUE– It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human fetal tissue for valuable consideration if the transfer affects interstate commerce.

Some statutes can be written in such a way as to obscure their meanings, but this one is not: fetal tissue sales are illegal.

(In fact, the sale of any human organ or tissue (with the exceptions of gametes, blood, and plasma) are illegal in the United State; only Iran (currently) has a legalized organ trade. It is a matter of serious ethical debate whether such sales should be allowed, but, again, under the current Uniform Anatomical Gift Act, they are prohibited.)

But what of the prices discussed? Scroll down to subsection

(d) DEFINITIONS – For purposes of this section:

. . .(3) The term valuable consideration’ does not include reasonable payments associated with the transportation, implantation, processing, preservation, quality control, or storage of human fetal tissue.’.

Et voilà: charging for fetal tissue is not illegal.

Again, this might be disturbing to those who are generally unaware of how biomedical research is conducted in this country (or around the world), or of the bloodiness of medical practice generally.

Jen Gunter, an OB/GYN and pain specialist, responded bluntly to the alleged wrongs revealed in that Center for Medical Progress sting video:

Hearing medical professionals talk casually about products of conception may seem distasteful to some, but not to doctors. Medical procedures are gory by nature. Surgeons routinely cut skin, saw bones, and lift the uterus out of the abdominal cavity and then put it back in. We stick our hands inside people and it is messy. We handle broken limbs, rotting flesh, and cancers that smell. We talk about this calmly because this is what we are trained to do. It doesn’t mean that we are heartless; it means we are professionals and this is our norm for a clinical conversation. There is no reason a conversation about products of conception requires more or less reverence than one about a kidney or a biopsy specimen.

Furthermore,

Hearing medical professionals negotiate with a private buyer over the price for collecting tissue may also seem distasteful, but there is indeed an expense involved for the donor (in this case, Planned Parenthood). FactCheck.org contacted several researchers who work with human tissue, and the price range mentioned in the videos—$30 to $100 per patient—is on the low end. “There’s no way there’s a profit at that price,” Sherilyn J. Sawyer, the director of Harvard University and Brigham and Women’s Hospital’s Biorepository, told the website.

Again, anyone could reasonably be put off by all of this, just as anyone outside of a particular field may be put off by the behaviors and standards of those in the field. I don’t want to see what happens in even an humane slaughterhouse, and I regularly avert my eyes (when not otherwise avoiding) depictions of animals being killed. I find it distressing.

But just because it is distressing does not mean it’s unethical. Some proponents of the “yuck factor” theory of ethics believe that our reactions of distress and disgust can be signals of a deeper moral response, but I think it more a matter of unfamiliarity and cultural taboo, and thus a rather unsteady guide to moral behavior.

In other words, insofar as I accept that biomedical research and medical treatment are in general both good, and that such practices depend at least in part on research on human body parts, I accept that something that sounds terrible—legal trade in human body parts—may not be terrible.

That said, I do think the tissue market as it currently exists, legal though it may be, is also problematic, largely because it pushes the process of commodification ever further into our bodies. That tissue banks aren’t always upfront about the destination of donated tissues, e.g., that skin may be used for a cosmetic surgery rather than burn patient only adds to the murk of this market.

They don’t want to overturn PL 103-43 or the UAGA, aren’t calling for changes to the regulation of the tissue markets, or going undercover at tissue banks. They aren’t concerned about how gross it is to skin a cadaver.

No, this is about abortion, not fetal tissue, not alleged illegal activity, but about how abortion in general and Planned Parenthood in particular are terrible.

In other words, while the issue of fetal tissue donation may be new to some, the message overall is same as it ever was.

My ire is focused on both the researchers and on the Proceedings of the National Academy of Sciences for engaging subjects in research without their knowledge and consent (the former) and not flagging this lack of consent in their publication (the latter).

Since the promulgation of the Nuremburg Code following the trial of Nazi doctors, informed consent has been a cornerstone of research ethics. The World Medical Association followed with its own guidelines in the early 1960s (revised many times since), and in 1974, the US Department of Health, Education, and Welfare (now Health & Human Services) promulgated 45 CFR 46 (also updated numerous times); the US regs were later reinforced by the Belmont Report.

Having written and designed this experiment myself, I can tell you that our goal was never to upset anyone. I can understand why some people have concerns about it, and my coauthors and I are very sorry for the way the paper described the research and any anxiety it caused. In hindsight, the research benefits of the paper may not have justified all of this anxiety.

and expect that your emotional sorriness makes up for your ethical sorriness.

Not that Kramer even gets the ethical problem: he’s sorry for the way the paper described the research and sorry that the results did not justify the anxiety, but nowhere is he sorry for violating the dignity of his subjects.

Which, by the way, is the whole point of the regs: the recognition and protection of the dignity of human beings.

And PNAS? Shame on them for publishing such egregiously unethical work.

A clinical experiment involving 1,300 premature infants at two dozen hospitals “failed to adequately inform parents” of the risks of the treatment, which included blindness, brain damage and death, according to a watchdog agency at the Department of Health and Human Services.

Where the hell was the Institutional Review Board (IRB)? If they do nothing else, IRB’s are to ensure that risks are clearly and correctly spelled out in the consent form.

“The consent form was written in a slanted way,” said Jerry A. Menikoff, director of the Office for Human Research Protections (OHRP), which found that the study was “in violation of the regulatory requirements for informed consent” required by federal law.

“They went out of their way to tell you that your kid might benefit,” he said in an interview. “But they didn’t give the flip side, which is that there is a chance your kid might end up worse off. You can’t have it both ways.”

To repeat, where the hell was the IRB?

They don’t design studies, don’t enroll subjects, don’t collect data; the IRB is there to review the study, make sure it is valid and designed to reveal reliable results, scrutinize the risk/benefit tradeoffs, and make sure the consent form gives potential subjects sufficient information of all of the above so that they can make an informed decision of whether or not to participate.

Absent that information, it cannot be said that subjects gave informed consent.

The study was an important one—what is the optimal range of oxygen to be given to premature infants to ensure survival—and apparently yielded significant results which will lead to changes in the treatment of preemies. That good information was extracted from the research does not, however, justify the slipshod manner in which subjects were enrolled.

The consent form made a big point that all babies would get oxygen within the “acceptable” range of 85 to 95 percent. It noted that babies in the lower range might have less eye damage. But it didn’t mention that those in the higher range might have more eye damage. And there was no mention that in the days before oximetry — when oxygen was measured more crudely — that premature infants that got higher concentrations of oxygen tended to have greater survival, although often at the cost of their eyesight.

Instead, the only risk the consent form mentioned was skin irritation from the oximeter device, a trivial problem.

What wasn’t made clear to parents was that the study created two groups of babies with different treatments — although both fell within “standard of care” treatment — for which the researchers expected there would be different outcomes. That was the point of the study.

No mention of serious risk. No clear discussion of differential treatment. These are basic basic basic components of any minimally-decent informed consent form.

People associated with SUPPORT defended the consent form and noted that it was approved by 23 “institutional review boards’” (IRBs), which are the committees each research hospital must have to oversee the design and ethics of medical studies involving human beings.

“I don’t have any regrets. Everybody went into this with their best intention. Nobody was trying to deceive anybody,” said Neil N. Finer, a neonatologist at the University of California at San Diego who ran the trial.

Excuse me while I scream GOOD INTENTIONS ARE NOT ENOUGH! It is not about the intentions of the researchers, but about their actions and, importantly, about the well-being of the subjects themselves.

Those IRBs should be re-organized, re-constituted, and all members and researchers retrained as to the conduct of ethical research.

I was sure I had seen this book review at one of the places I frequent online, and I didn’t write it down or bookmark it, so that meant I’d be able to find it easily when I decided to go back and use it as a springboard for a post.

Except I couldn’t find the damned thing.

Slate? Nope. HuffPo? Nope. I knew it wasn’t Sully (who’s being a real prick about the whole retail servitude thing, by the way), wasn’t TNC. Someplace on the Atlantic site? Books? Health & Medicine? Tech? Nope nope nope. Didn’t think it was ThinkProgess or CrookedTimber, but checked anyway—nada. Christianity Today? Fred Clark? Nuh-uh. Really hoped it wasn’t Brad DeLong or Marginal Revolution or Pharyngula because it would be a total pain in the ass to try to dig it out.

It didn’t help that I didn’t know the title and I didn’t know the authors—although I did know there were two authors.

And I did know the topic: something about genetics and society. So, off to Amazon to try to track down the book. “Human genetics” didn’t get me there; neither did “genes” or “genetics” or these subjects coupled with “2013” (I knew the book was new). Nothin’. Same at Barnes & Noble.

What gives?! Did I NOT see a review of a recent book on genes and society? Was I imagining all of this? Jay-zeus Christie.

So: onward to the Giant Omnivorous Omniscient Grabbing of Life and Everything search, with different terms. At some point I plugged in “genetics ethics” and there on the top of the third page, a piece from the Guardian:

Video (5min 28sec), 30 Jan 2013: Hilary Rose, co-author of Genes, Cells and Brains, argues that we should treat the medical claims made for genetic research …

Bingo! Hilary Rose! So back to the aforementioned sites and plug in Hilary Rose and. . . NOTHING! DAMMIT.

And then I thought: What about The Daily Beast? They do books, don’t they? And lo! There it was:

The Selfish Gene: The Broken Promises of the Human Genome Project

Jan 29, 2013 2:39 PM EST

What did the Human Genome Project give us? Better shampoo and billions of dollars’ worth of economic projects, but what happened to improving our lives? By Michael Thomsen.

There is a point to all of this, I promise you, but since it’s really just another way for me to lash myself over the stupid, stupid decisions I’ve made regarding my dissertation and career, I think I’ll save that for another post.

For this one, let’s end on the happy thought that I am not, in fact, crazy. At least on this.

Bishop Thomas Olmsted called the 2009 procedure an abortion and said St. Joseph’s Hospital and Medical Center – recognized internationally for its neurology and neurosurgery practices – violated ethical and religious directives of the national Conference of Catholic Bishops.

“In the decision to abort, the equal dignity of mother and her baby were not both upheld,” Olmsted said at a news conference announcing the decision. “The mother had a disease that needed to be treated. But instead of treating the disease, St. Joseph’s medical staff and ethics committee decided that the healthy, 11-week-old baby should be directly killed.”

St. Joseph’s president Linda Hunt took the outrageous position that

“If we are presented with a situation in which a pregnancy threatens a woman’s life, our first priority is to save both patients. If that is not possible, we will always save the life we can save, and that is what we did in this case,” Hunt said. “Morally, ethically, and legally, we simply cannot stand by and let someone die whose life we might be able to save.”

It was precisely this attitude, as well as the unwillingness of administrators and doctors to promise never ever ever again attempt to save a pregnant woman’s life when that procedure might end the life of the fetus that led the diocese to strip its affiliation from St. Joseph’s.

ETN asked the Bishop [Janusz Kaleta of Holy See, the Apostolic Administrator of Atyrau] if the Vatican’s stand was clearly against [gay] tourism, and the Bishop answered: “The church teachings are from the Bible. If we change this teaching, we will not be the Catholic Church. Don’t expect the Catholic church to change these issues, because it is our identity.” When asked if the Vatican is open to dialogue about welcoming such homosexual groups of tourists in the future, Bishop Kaleta responded that “such demonstrations are just not ethical.”

Publisher Steinmetz clarified that what was meant by gay travel was traveling for the purpose of a visit, not as a demonstration. To this the Bishop replied, ”I consider if someone is homosexual, it is a provocation and an abuse of this place. Try to go to a mosque if you are not Muslim. It is abuse of our buildings and our religion because the church interprets our religion that it is not ethical. We expect respect of our church as we expect to respect that a person does not have to belong to the Catholic Church. If you have different ideas, go to a different location.”